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Self-Determination Network News:

June 2020

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2020 Self-Determination Conference

The Wisconsin Board for People with Development Disabilities (WBPDD) announced that the 2020 Self-Determination Conference will be virtual in October. There still will be opportunities to participate in the things we all enjoy such as attend sessions led by self-advocates, have chances to obtain get information from exhibitors, shop at a virtual micro-business store, have time to chat with friends, and much more. In this time of uncertainty, the WBPDD and its sponsors understand people maybe struggling. In hopes of easing the burden, registration for the conference will be free for everyone this year! Stay tuned for more information about registration in the coming weeks, but, until then, we invite you to listen to the popular self-determination song that's played at the conference every year. Peter Leddy changed the words a little bit. We hope you enjoy it! 

Check Out The Latest Videos! 

The Self-Determination Channel is a YouTube channel by and for people with developmental or intellectual disabilities. Unlike other channels, the Self-Determination Channel stands stand out from other channels on YouTube because self-advocates host the videos, and decide and create the content.

Videos are posted a couple times a month on a variety of topics self-advocates care about such as technology, employment, caregivers, independent living, and advocacy. This month, we're introducing something a little different. One of the hosts on the Channel, Stacy, is going to do a vlog (which is a video blog) about her experiences living with a disability. We hope that you may be able to relate to some of the things she shares. We encourage you to share your own experiences and thoughts in the comments below the video. 

Check out the newest videos on the channel:

• Thank You #EssentialWorkers
• Don't Tell Marie What She Can't Do, She'll Prove You Wrong
• Stewing with Stacy: Let Me Introduce Myself

We encourage you to subscribe to the Channel (you can do by clicking the red Subscribe button on any of the video pages).

The Self-Determination Network includes some very talented members and we want to help you to get to know each other a little better. Member Spotlight is a great way for us to get to know each other better.

In June, we're shining the spotlight on Julie. This awesome mother strives to help her daughter have control over her life and encourages other parents to do the same. Stop this month's Member Spotlight to get to know Julie.

Who should we shine the spotlight on next?

Stacy’s Journal

"I find it incredibly sad that there isn’t a better option for people like me. I don’t have all the answers, but, until the day I die, I continue to advocate to make things better."

In this month's journal entry, Stacy opens up her continual care struggles. She discusses her experience with trying another program. Have you had a similar experience? We encourage you to share your thoughts and experiences as well.

Take five minutes to check out what's happening on the Self-Determination Network:

• Coronavirus Heightens Caregiver Shortage:   For people with disabilities who are reliant on other people to assist them with all of their basic needs, the virus has brought some additional challenges. Read about some of the issues people are facing.
• House Approves Payment for People with Disabilities:  A new round of stimulus checks for people with disabilities and billions for home- and community-based services are part of a $3 trillion relief bill that faces an uncertain future.Learn more about this bill. 
• Guidelines for Voc Rehab Services:  New guidance from the feds suggest that Vocational Rehabilitation agencies can continue providing services during the pandemic, but adjustments will be needed. Find out what is being done to keep people safe. 
• Wheelchair Accessibility Feature:  Google Maps now has a feature that indicates whether or not a place is wheelchair accessible.Learn how it works. 
• Be Inspired:  Two self-advocates are on an unique mission to raise awareness for people with disabilities. Read about what they're doing. 
• Self-direction Model Becoming More Popular:  With the pandemic, living in a facility setting has become much more dangerous. Read about why people are choosing the Self-direction model more and more these days. 
• Website Accessibility Not a Priority:  According to a recent study, most organizations don't do accessibility testing on their website. Learn what else the study found. 
• Increase the Affordable Care Act: The Coronavirus has resulted in job loses or income changes, which has had an effect on health care. Learn why many people feel that Congress should pass a law--or laws--that would increase access to health insurance through the marketplace created by the Affordable Care Act.
• Online Disability History Exhibit:  The Smithsonian put together an online exhibit about the history of disability in the United States. Find out what it includes.
• Resource for Job Seekers:  Finding employment is hard for everyone right now. Learn about a helpful resource for job seekers with disabilities.
• Positives During a Pandemic:  The pandemic has caused havoc across the world, but it has also brought out some positives for people with disabilities. Learn about going virtual has been a huge positive for students with disabilities at one Milwaukee theater. 
• Hospital Visitor Policies:  When the pandemic hit, hospitals quickly no visitors policies into effect. Often, people with disabilities rely on support from family and friends to effectively communicate with medical staff.  Read about what laws allow people with disabilities to have attendants in the hospital to assist them.  

Upcoming Events

Here's a sample of upcoming events listed on the Self-Determination Network:

• Webinar: Virtual Wellness: June 18th, 1p.m. to 2p.m., Online
• Webinar: Partners With Business: Building Capacity With Employers And Service Providers: June 25th, 10:30a.m. to 11:30a.m., Online
• Webinar: Partners With Business: Building Capacity With Employers And Service Providers: June 30th, 9a.m. to 10a.m., Online
• Webinar: Using The ADA And ABA Standards - Chapter 6: Plumbing Elements And Facilities: July 2nd, 1:30p.m. to 3p.m., Online
• 2020 Janesville Adaptive Water Ski Clinic:  July 10th, 9a.m. to 3p.m., Traxler Park on the Rock River, Janesville WI

Post your event on the Self-Determination Network and it can be included in future Network News emails to members! Questions? Suggestions?  Contact Stacy Ellingen. 

The Self-Determination Network is powered by InControl Wisconsin and supported financially by our members and Sponsors. We couldn't keep this Network going with you!  Find out how you can help support the Network.

When the pandemic hit, hospitals quickly no visitors policies into effect. Often, people with disabilities rely on support from family and friends to effectively communicate with medical staff. Under laws such as the Americans with Disabilities Act (ADA)  accommodations like these are required. In response to a recent federal complaint filed regarding discriminatory "no visitor" policies, the Office for Civil Rights (OCR) at the U.S. Department of Health & Human Services announced a resolution making clear that federal law requires hospitals and the state agencies overseeing them to modify policies to ensure patients with disabilities can safely access the in-person supports needed to benefit from medical care during the COVID-19 pandemic..

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The pandemic has caused havoc across the world, but it has also brought out some positives for people with disabilities. For this Milwaukee theater, going virtual has been a huge positive for students with disabilities. The Students who have sensory issues love being able to do classes in their own homes where they're more comfortable. Transportation isn't an issue for students with physical disabilities. 

Read more

Finding a job for anyone is difficult right now. It's no different for people with disabilities. The Department of Vocational Rehabilitation is often a good place to start. On their website, people can do things such as search for jobs and participate in career counseling and training. 

Read more

Meet Julie.  This awesome mother strives to help her daughter have control over her life. She strongly encourages other parents to do the same. She is always looking for ways to help her daughter make her own choices. We’re so fortunate to have her as a member of the Network! 

What's your story?  Tell us a little bit about yourself.  How are you involved with self-determination? Why did you join the SD Network?

Julie is the mother and legal guardian of Emily who has different abilities. She joined the Self-Determination Network to see if she could get ideas for Emily to be more self-determined.  “Given that she is quite challenged in terms of using her mind and body, I wanted to learn whatever I could to work around limitations,” she explains.  When she obtained guardianship, she felt a strong obligation to help Emily have control of her life.  This weighed heavily on her, and she tried to find more ways to help Emily make her own choices.  One way that she does this is considering Emily’s response to an activity.  If she doesn’t want to do something, Julie will give her five minutes and then try again.  She says, “many times, she just doesn’t like change and is comfortable where she is.”  Julie explains they don’t always have a way to communicate the new activity to Emily, so she doesn’t know that it will be fun (or necessary).  Julie shares that Emily is deaf and blind.  They use some hand-under-hand signing with her.  “If she doesn’t want to “hear” what we are telling her, she puts her hands behind her back and emphatically shakes her head no” Julie adds. 

Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination?

Julie is excited that the weather is finally warming up. This allows Emily the opportunity to do what she loves best—go for walks in her wheelchair and sit in the screened porch and enjoy the outside. 

What tip or resource would you like to share with people who want to be more self-determined?

To help other parents help young adult children with self-determination, Julie suggests to offer options and wait times when possible. She encourages parents not to just “do things for them” without explaining what you’re going to do and why.  “When Emily doesn’t want to put her coat on, I sign “It’s cold outside.  Coat on.” Instead of just pushing her arms through the sleeves.  Sometimes, that’s all she needs to decide that she will wear her coat,” she explains. 

What are some of your hobbies?

 When we are not quarantined, Julie shares that Emily goes to an adult day program.  There, they offer opportunities to socialize, practice skills and be in the community.  Emily joins activities like a trampoline park, swimming, shopping, and outdoor walks.  She is well-loved there, and we have found awesome caregivers who can provide respite for parents.  They take her to restaurants, clay class, and other activities.  Julie adds that Emily loves to be outdoors, when it is nice out.  She enjoys the sun and breeze on her body.  She has a hot-tub (from MakeAWish) that she really loves.  “She has special water wings that help her float independently and I can tell that makes her happy,” Julie says.

***We love hearing the views and opinions of Network members. We need to mention that the views and opinions expressed on this site are those of the person who is sharing them. They do not necessarily reflect InControl Wisconsin or any of our supporters and funders.

EveryBody, an online exhibit put together by the Smithsonian, is meant to tell the history of what it has been like to have a disability in the United States. It looks at objects that people with disabilities have used, including a sewing machine, utensils with chunky handles, and past objects used to raise money for people with disabilities. Twenty-five percent of American adults have a disability, and this exhibit shows how they have been a part of American history.

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The coronavirus has resulted in job loses or income changes, which has had an effect on health care. Many people feel that Congress should pass a law--or laws--that would increase access to health insurance through the marketplace created by the Affordable Care Act. This is especially important during a pandemic and severe recession. Congress could make the marketplace plans more accessible and affordable. States that run their own marketplaces did this, and it allowed more people access coverage.

Read more

Although most say they deem product testing by people with disabilities a priority, according to a recent study, most organizations still don't do accessibility testing on their website.  There were many notable points that came from this study. 

Read more

As we've heard about, this pandemic has posed additional challenges for the elderly and those with disabilities. For people in long-term facilities, it would be much safer to live in their own home. People who are fortunate enough to be able to stay at home and have in-home care are finding workers to be less available during COVID. There is an alternative to institutional care that's available under Medicaid and the Veterans Directed Care programs. The self-direction model allows people with disabilities to enjoy living in their own home rather than a facility. Given the scope of this pandemic, many people feel that Congress should step up funding for self-direction programs. 

Read more

What happens if my parents both suddenly pass away? What would happen to me? What would I do? Where would I go?  These are not normal questions for a person my age to worry about, but for many adults with disabilities these are very real concerns. I recently turned 35 years old and my mom casually asked a deep question. Are you where you thought you’d be at 35?  My response was I don’t know where I thought I’d be, but I’ve learned that the system isn’t setup for a person like me. “And that’s really scary,” I added. For full disclosure, I may have added some choice words to that statement, but you get the gist of what I’m trying to say. Let me explain.

Before last Christmas, I knew I needed to hire some new caregivers because I had people moving on and students who were going on clinicals. I posted and hired some people before the holidays. Due to paperwork and approval time, I couldn’t have them start until after the holidays. As it turned out, all of the workers we just hired were no longer interested in the position. We held interviews in the middle of January. We had six interviews, but unfortunately, none of the six showed up. By that point, I was beyond frustrated. My parents and I talked, and I decided it was time to try something different.

I made the tough decision to try Family Care. My mom called the ADRC and a case worker agreed to meet with us. Leaving IRIS was the last thing I wanted to do, but I felt I had no choice. I had been in IRIS over 10 years, and had become quite involved with advocacy for the program. I loved every part of it, but I just continually had problems finding workers. By leaving IRIS, I felt like I was giving up on myself. I hated it, but kept telling myself it was for the best. I dreaded the meeting with the ADRC. Luckily, the case worker that my mom and I met with was very nice and understood my situation. We asked many questions and we learned most of the questions we had were for the Managed Care Organization (MCO) I’d choose. I chose the MCO I heard the most about from others. We filled out the transfer paperwork, but before sending it in, I asked the case worker to hold off until I told people at my IRIS Consultant Agency know what was going on. It was very important to me that I be the one to tell them what was going on because they had been excellent to me. The case worker understood. When we were doing the paperwork, very admittedly, I broke down. With tears in my eyes, I said, “I just don’t want to end up in a (group or nursing) home.” The case worker assured me that that’s a last resort.

Later that evening, I wrote emails to the people I needed to tell. Everyone was understanding of my situation because they knew the constant struggles I was having. They cautioned me to be assertive, and to not to give up all self-direction. Those were very hard emails to send because I knew I didn’t want to switch and felt like I was letting them down, but again I kept telling myself it was for the best. After I sent those emails, I gave the case worker the okay to send in the transfer paperwork. About a week later, I finally got an email from a MCO case manager about setting up a meeting. It was another week before they could meet with my parents and I. Already red flags were popping in my head because I’m not one to wait on getting things started.

A week later, the case manager and nurse came to my apartment to meet with my parents and I. We asked a lot of questions and got the process started. They told us it may take two agencies to staff my shifts. I wasn’t sure how that’d work, but I was okay to try it. I found a couple things very interesting. Family Care doesn’t allow hours for anything other than personal care and basic housekeeping chores. They wouldn’t give me hours for workers to assist me if I wanted to do anything fun such as meet friends for dinner, go shopping (for fun), or go to the movies. I could use my allotted hours to do those things, but since I wouldn’t have budget authority, there was quite a discrepancy in the number of hours I’d get (for Supportive Care). It was interesting to learn that I don’t qualify for 24\7 care unless I move into a group home or nursing home. Not that I want or need that right now, but it’s interesting that because I’m cognitively fully aware that I don’t qualify for around the clock care even though physically, I need so much assistance. Nevertheless, we proceeded with putting together a plan for me.

Over the next several weeks, under their direction, my parents and I met with a few care agencies. I signed a bunch of Release of Information forms allowing the MCO to talk to agencies about my needs. The agencies we actually met with only could take a couple shifts per week and most didn’t have a reliable backup system. The case manager supposedly talked to 12 different agencies and had very little luck. All the while, I was in limbo with my current workers trying to figure out what to tell them.

The idea of having multiple agencies began to scare me more and more. I asked what would happen if an agency decided they could no longer fill the shift. The case manager said they’d ask another agency if they could do it. I then asked what happens if no one else was able to. She said they’d have to look for a place for me. I’ve been in the advocacy world long enough to know, although its many times denied by organizations, that exact scenario happens all too frequently. I now see exactly how others with similar circumstances end up in nursing homes and group homes.

After a couple more weeks communicating with the MCO, I talked with my parents and decided to stay on IRIS for the time being.  I’m incredibly fortunate that as long as they’re able to physically take care of me, my parents will not allow me to go into a facility. This is a huge sacrifice on their part. We’ve been talking about how we both need to make sacrifices in order for this to work. They’ll be there for me as long as they are physically able, but I also need to let them travel a little bit which often means going with them. As snooty as it sounds, I often don’t like traveling as often as they do and where they do. That said, I realize that I need to let them somewhat enjoy their hard-earned retirement. We’re working on finding a happy medium.

In late April, I posted for caregivers, and we set up a where we had five interviews. Unfortunately, again, we had five no shows, but we had better luck in early May. I now have three or four new workers. It’s a process getting everyone trained and comfortable, but we’re getting there. I may even be able to stay at my apartment most of June! That hasn’t happened in months, so after a very rocky first half to the year, things are looking up a little bit.

However, I know how quickly things can change and I know there will be several more bumps in the road. During the conversation with my mom I told her I feel like the “system” isn’t made for people like me. Now, at least we’ve explored the all the options and know how Family Care operates. I find it incredibly sad that there isn’t a better option for people like me. I don’t have all the answers, but, until the day I die, I continue to advocate to make things better. We, as humans, deserve it!

***The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.